The Caregiving Soul:

[00:00:30] Dannelle: According to the Alzheimer’s Association, worldwide 55 million people are living with Alzheimer’s and other forms of dementia. A diagnosis of brain change is so challenging for both the primary person impacted and their family and friends. In addition to this life-changing diagnosis, the overwhelm of where to turn for information and community adds even more stress to a major life curve ball. 

[00:01:01] The Alzheimer’s Association works to provide resources, community and therapy-based support, leading the way to make navigating brain change a little more livable for all involved. Monica Moreno is the Senior Director of Care and Support at the Alzheimer’s Association, where she oversees education and support services for people living with dementia and their care partners. 

[00:01:29] Welcome to The Caregiving Soul. I’m Dannelle LeBlanc. 

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[00:01:35] Monica: A diagnosis of Alzheimer’s disease is absolutely life changing. We know that today in the United States, there’s more than 6 million Americans who are living with Alzheimer’s disease and they’re being cared for by more than 11 million unpaid caregivers who are typically family members and women who are providing care. 

[00:01:53] A lot of people have this misperception where it’s just memory loss, right? But it is a terminal disease and there is no cure. And we know that as the disease progresses, the individual who’s diagnosed their needs are going to continue to grow. The care costs are going to increase and ultimately at the late stage of the disease, they are going to require around the clock care. 

[00:02:16] You know, we did a, a study, the Alzheimer’s Association, where we ask people living with the disease and we found that it usually takes around six months for them to kind of put their arms around the diagnosis. But some of the emotions which are very normal for someone to feel are anger, denial. Some people may not wanna believe this is their diagnosis and may want second and third opinions, which is okay. We also know that people can experience depression, and it’s normal. 

[00:02:43] I, I think it’s really important to, to stress that these are normal emotions that people go through, but when depression doesn’t seem to get better, and now it’s starting to have some life altering impact, that’s when we really encourage individuals to seek some type of counseling. 

[00:02:59] And at the Alzheimer’s Association, we have a 24/7 helpline, so we have master level clinicians who are available to families and those living with this disease that they can provide that type of counseling over the phone and really guide them to resources locally where they can continue to get that support to help them through these emotions that they’re experiencing. 

[00:03:18] Dannelle: When we’re dealing with these symptoms, whether it’s the person who is diagnosed, or the family members, having uncertainty can just exacerbate the early stages in particular. And I’m curious about what are some of the first steps that you encourage people to help people effectively support themselves, or their loved one, a parent, to ease into what is really a new reality? 

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[00:03:55] Monica: It changes everything, right? It changes the roles and responsibilities of the person who’s supporting the individual who’s received that diagnosis. Number one, we always tell families, friends of the person, get educated to help understand what is this diagnosis, what are you dealing with, what can you expect as the disease progresses. So, getting educated. 

[00:04:16] We did a survey with caregivers and people living with the disease in the early stage a number of years ago, and we asked them what was most important to you after diagnosis? And, not surprisingly, caregivers wanted to make sure that the person living with the disease maintained their independence and they wanted them to be as healthy as they possibly could for as long as they possibly could. 

[00:04:38] So, the challenge comes then is how do you actually make that happen? Right? And having those real open and honest conversations is so critically important and so we have to be able to allow them to feel the grief, and the sadness, the sense of loss that they may be experiencing from the symptoms that they’re already experiencing, but also thinking about the future losses that they may experience and just allowing them time to be able to do that. 

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[00:05:07] I think for caregivers and care partners, it’s important to kind of encourage the person to learn about their diagnosis. You may have to allow a couple weeks or a couple months for that person to really deal with the diagnosis that they’ve been given, but then encouraging them to be able to learn more about it at their own pace, and that’s what we’ve done at the Alzheimer’s Association. 

[00:05:29] So, we developed webpages around living well the disease, as well as life after diagnosis, to really share perspectives of others who’ve gone through this and can really share any tips or strategies that they think will be helpful for those who are just starting on this journey. 

[00:05:47] Dannelle: That’s wonderful, and I think one of the things that happens for care partners is when we receive a diagnosis of Alzheimer’s or some other life-changing health condition, when we go about life in the status quo, and then something like this happens to us, it presents an opportunity for choice, because not everybody has a great relationship necessarily with their parent, or with the person that they expect to care for. 

[00:06:24] So, how we approach it is really critical to how we’re going to experience caregiving, as well as for the person who is diagnosed. And I’d love to hear your perspective on some of the ways a relationship between an adult child who is a primary care partner and their parent changes during the progressive stages of care? 

[00:06:53] Monica: It’s certainly a shift, right? In roles and responsibilities, and when we’re talking about adult children who are now in the role of being a caregiver to their parent who’s living with Alzheimer’s disease, we also need to think about the fact that they’re probably still working, they may still be raising children, and so there’s financial responsibilities that they have as well. All of these things have to be taken into consideration. And now you also have a layer of having to be a caregiver to someone living with the disease.  

[00:07:27] And to your point, as the disease progresses, those care needs are gonna grow. And so, eventually that individual who’s been diagnosed is not gonna be able to be home by themselves. They’re gonna need assistance with their daily care. And how is that gonna be provided when you as a, an adult child. Still have all of these other responsibilities that you need to take care of. 

[00:07:46] And so, there’s a couple things that we tell families and adult children, and this is really for any caregiver who’s caring for someone living with dementia, is you need to be able to build a support team. You cannot do this alone. You cannot do this by yourself. And that support team could be people from your church, it could be neighbors, it could be families. 

[00:08:05] To your point, not all families have great relationships, right? There’s a lot of different dynamics that come into play in all of this, and so as a caregiver, you have to really think about who do you want to be part of that support team to help you? And maybe there’s things that they’re better at doing or that they’re willing to offer to help you to do, but sometimes I think caregivers are really hesitant to ask for help and receive help because sometimes they may feel that, well, then it just means that I’m not a good caregiver. 

[00:08:33] And I always tell caregivers, that’s not what it means, right? You’re still the primary caregiver, but you can’t do this alone, and you really need to be able to build that support to be able to help you. Because if you’re not healthy and if you’re not taking care of yourself, you cannot be an effective and good caregiver to the person living with Alzheimer’s disease. And I think it’s one of the hardest things for people to be able to do, is really reach out for help and ask for help and have those conversations. 

[00:08:58] The other thing that we’ve learned, that’s really important, and can make a significant difference in the experience of caregivers, is to be able to connect with other caregivers who understand what they’re going through. This also pertains to those living with the disease, right? 

[00:09:13] Nobody knows what it’s like to sit in a doctor’s office and get a diagnosis of Alzheimer’s disease than somebody else who’s also been through that same exact situation. And so, providing the opportunity and the channels to get people connected so that they can have conversations, they can ask questions as they encounter different scenarios or situations. 

[00:09:35] Not all of those tips and strategies are gonna work for everyone, so it really is helpful to get different perspectives and opinions so that you can decide what is gonna best meet your needs to be able to address the questions that you have or the challenges that you might be experiencing.  

[00:09:50] Dannelle: So true, absolutely critical, and makes a huge difference in how we experience and navigate the emotions and the challenges, and to know that we are not alone, and to help us to understand and think about what’s possible, as we move forward and as the disease progresses. What tips would you suggest for cultivating this new connection moving forward for care partners? 

[00:10:26] Monica: I think building that connection and, and maintaining that connection looks different, especially as the disease continues to progress. So, you know, in the early stage of the disease, certainly when the person is still very independent and able to engage in the social activities that they’ve done before, the support of their care partner is really important, and having those conversations about what is most important to you living with this disease, and what is it that you wanna be able to accomplish? 

[00:10:54] A lot of times those conversations are not happening, especially in the early stage of the disease. One of the things that I find becomes very challenging is for the care partner, when do I actually step in and help the person, right? Because you don’t wanna upset them and do something for them that they feel that they can still do for themselves, because that independence and autonomy is still critically important to them. And so, that connection is really about conversation and having these discussions. 

[00:11:11] And that conversation is not a conversation that just happens once, but that’s a conversation that should continue to happen on a regular basis, especially as the person’s disease progresses and their need for support is going to change over time. If there’s things that they’ve always enjoyed doing – hobbies and things like that, well then let’s find a way that we can help them to continue to do that. 

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[00:11:45] I remember speaking to someone living with Alzheimer’s and he said, “You know, I used to love to play baseball. I can’t do that anymore, but I can still go to the game and enjoy the game in that way”. It’s really about looking at how can you stay connected and help that person stay connected in life, but maybe it just looks a little bit different than it did before the diagnosis.  

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[00:12:06] And then certainly as the disease progresses, it can become a little bit more challenging. And how do you stay connected to your parent when the disease is progressing and now their communication or their ability to communicate is being impacted, right? Communication, whether verbal or through body language, is so critically important between two people, and when one of those individuals loses the ability to communicate in that way, it can be very challenging for an adult child who’s a caregiver. 

[00:12:37] So, we start to talk with families about person-centered care, and it’s how do you take what you know about the individual, their likes, their dislikes, their preferences, and how do you use that in a way to connect with the individual. So, for example, someone who may not be able to communicate as well anymore, they loved to play the piano, the way that you can stay connected is to take them someplace where they can hear someone play the piano or show them someone playing the piano on the video, right?  

[00:13:09] So, how do you connect with someone who can’t even communicate back, not even in simple words? And a lot of that is really through touch and sound, and really focused on the senses. It’s about thinking about those ways that you can stay connected with the individual in the ways that they enjoyed in the past, and really being able to leverage those preferences.  

[00:13:32] We say every encounter with someone living with the disease should be an opportunity to engage that, whether you’re helping them brush their teeth, whether you’re helping to feed them, you know, it’s not about the task of getting the task completed. What are you doing to communicate and stay engaged to that person while you’re doing the task? 

[00:13:52] An example that a colleague gave to me was, if someone loved to bake, and they’re still able to kind of mix cookie dough or put the chocolate chips in there, at the end of the day, if the dough is horrible and you’re never going to eat it, who cares, right? It’s really about the activity that you did together, and that’s the connection that happens in that activity. It’s not the end results. 

[00:14:17] And what we tell caregivers, you kind of have to have a mantra to use, ‘does it matter? So what?’ Right? And I think if, if caregivers kind use that strategy, I think a lot of things that they may encounter and some of the challenges that they may experience, at the end of the day, does it really matter? It doesn’t. You know, it’s really living in the moment, staying connected in the moment, and really thinking about what can you do to stay connected to that individual that’s meaningful to them, regardless of the stage of the disease that they’re living in. 

[00:14:49] Dannelle: Yes. That’s one of the most important lessons. I also think it’s a really important point that you made about connection not being limited to verbal communication, and to be prepared and to practice ways to connect with their loved one beyond using words, and practicing using touch, and recognizing emotions, so that in the later stages it is something that is a part of how we communicate. 

[00:15:30] Monica: I completely agree. You know, the other thing I wanted to mention was dementia related behaviors are a form of communication. So, whether it’s someone who’s wandering, who might become really anxious, they’re trying to communicate something, that there’s a need that they have. As caregivers, especially if the person is having difficulty communicating, it’s their job to try to be the detective and figure out what is that need that they have.  

[00:15:58] You know, one of the things that we tell caregivers, and this is something that adult caregivers can use as well, is that you really want to be able to try to connect to the emotion that the person is experiencing, and not that’s causing that behavior, right? If someone is anxious, what’s causing them to be anxious? Is it that they’re afraid, that they’re cold? Is it that they don’t know where they are? And then being able to connect to the emotion and then reassure that person, ‘you’re safe, if you’re cold, let me get you a sweater’. 

[00:16:29] And that can really help to reduce or minimize dementia related behaviors, and that’s where that whole person-centered care and knowing that person, all of this knowledge about the individual can really help caregivers to identify the triggers for dementia related behavior and then be able to connect to that person because they’re dealing with the feelings that they’re experiencing.  

[00:16:51] Dannelle: Yes! This is one of the most important things that I learned about caring for someone with brain change. So, my father-in-law had Parkinson’s disease, and he had some dementia related behaviors, but one of the things that stayed with me was this idea of the dementia related behaviors being a form of communication.  

[00:17:21] So, a lot of times we may inappropriately respond thinking that we’re just addressing a behavioral challenge when it’s actually that someone is uncomfortable or in pain, there’s something wrong. And so, we’re treating the behavior, but the cause for the behavior is still happening. And so, just that realization, that digging a little deeper, finding out more, is, oh my gosh, makes a huge difference. 

[00:17:57] Monica: Right, and what happens is that when you don’t take the time to think about what is the person trying to communicate or what is triggering that behavior, that can lead to someone being placed on medications to address the behavior. But to your point, we’re not really addressing the reasons that the behavior occurred to begin with. 

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[00:18:16] We always wanna encourage families to first start out with thinking about what is the person trying to communicate? It’s about getting educated, and then getting connected to other caregivers to be able to share your stories, share your tips and strategies. There’s so much to learn, but hearing from others who’ve gone through it can be of help to other caregivers as well. 

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[00:18:37] Dannelle: It is really just a reminder of the importance of community care.  

[00:18:44] Monica: Can’t do it alone. Can’t do it alone.  

[00:18:46] Dannelle: No!  

[00:18:47] Monica: The words that I, I hate to hear from any caregiver is when they find out where myself or my colleagues work, and they said, ‘I wish I had known that the Alzheimer’s Association existed then, right when my mother, my father, my grandparent…’ And as I say, nobody should go through this disease alone and we really need to make sure that the families know that there are resources like the Alzheimer’s Association that are available. There is our 24/7 helpline. Whether it’s a simple question about the disease, whether it’s more complex, whether it’s counseling that’s needed, you know, we’re available 24 hours a day, seven days a week to provide that at no cost. 

[00:19:23] Having the knowledge of what resources are available in your community is so critically important, from the very beginning of this journey, because things are gonna change, and the, the experience is gonna change for the caregiver as well as the person living with the disease. So, you gotta be able to have access to these resources right away and then just continue to go back to them and leverage those resources based on what you need in the moment. 

[00:19:48] Dannelle: Community and support is critical but even more impactful and important, because there’s unfortunately still stigma attached to dementia related behaviors. If you’re caring for somebody with brain change and, you know, you wanna go out to lunch somewhere, the challenges involved with that and feeling like, you know, embarrassed or judged because other people may not understand, is another variable, another factor that, that care partners have to deal with. What perspective do you have on that? 

[00:20:37] Monica: I’m so glad that you brought that up, because stigma plays such a significant role in how people experience this disease, whether they’ve been diagnosed with Alzheimer’s disease or another form of dementia, or the family or friend who’s supporting the individual. And stigma of the disease can cause people to become very isolated and there’s a lot of relationship changes with friends and family that can occur. 

[00:21:00] I think what caregivers, and those living with the disease, can do is really feel empowered to educate others about the disease. To your point, so that they know what is Alzheimer’s disease, what are some of the symptoms, and then begin to talk about if I’m caring for someone living with Alzheimer’s disease and maybe holidays, right? Maybe a lot of overstimulation can cause them to become anxious. They’re gonna need to go into a quiet area of the home.  

[00:21:33] Letting family members and friends know that this may happen in advance and why the person may leave, just sets a better stage for the experience, not only for the friends and family, but for the caregiver and the person living with the disease, right? Everyone goes about enjoying the holidays together or whatever the event may be. But it’s really critical and caregivers can feel empowered to be able to share information about Alzheimer’s disease, or whatever dementia the person is living with. 

[00:22:02] We’re doing everything we can to try to reduce stigma of this disease. And certainly those who are sharing their diagnosis and talking about their experience and helping to educate others, they’re helping to reduce stigma of Alzheimer’s and other dementia. So, hopefully that will help to expand that support system, especially as the disease continues to progress. 

[00:22:26] Dannelle: Yes, and make our communities, make, our world, a more empathetic place when we’re open to what’s different, what is unfamiliar or uncomfortable, or is frankly awkward.  

[00:22:44] Monica: Right. 

[00:22:45] Dannelle: Like just living with the awkward, welcoming and embracing the uncomfortable and the awkward as something that can bring new connections and joy in what is seemingly just on its surface, something so heartbreaking and devastating. 

[00:23:11] Monica: Yeah.  

[00:23:11] Dannelle: Monica, it has been such a pleasure to have you join us on The Caregiving Soul. Thank you so much! 

[00:23:19] Monica: Well, thank you for inviting me and for helping to elevate and raise awareness of the disease.  

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[00:23:27] Dannelle: Thank you for joining our conversation with Monica Moreno. Because we lean on verbal communication, Monica emphasized the importance of including touch, body language, and other forms of emotional connection beyond words. And when we can take action through hard conversations in the earlier stages of a diagnosis, we’re better prepared for what’s most important to our loved one when nonverbal behaviors become the primary way our loved one communicates. 

[00:24:05] Check out our show notes to connect with and follow the Alzheimer’s Association to stay educated through their free resources and connect with others who are navigating a similar diagnosis. 

[00:24:19] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links.  

[00:24:31] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod.  

[00:24:46] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts.  

[00:25:03] And remember, the right care includes care for you.  

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